Barnmaven

Our real lives

 

I was thinking about my brother the other day.  I wonder sometimes in those last days of his life what thoughts were going through his head, if he was in pain, if he knew he was in trouble.  I wonder if he knew he was teetering on the brink of dying and whether he was OK with that or if he would have wanted more time to change things.  I prefer to cling to the latter notion.

I don't believe he was living the life he envisioned himself having, not by any means. That's the thought that inevitably leads me to the rabbit hole, the endless conundrum of the probability of any one person ever fully achieving self-expression versus the actual necessity of this occuring. 

Bloom where you're planted.  Be happy in the shoes you're in.  Success is the path, not the destination.  I want to believe these things - and in many ways I do believe these things - but I also believe that these are things we are taught to make us feel better about being forced into lives many of us have no viable option of escaping.  We gratify our need for expression and validation by telling ourselves - and asking others to confirm it for us - that we're OK.  

Its a beautiful, terrible thing, the human condition.  The ability of this world we've constructed to continue functioning, like the Matrix, relies on our inability to slow down and think too very hard about these things.  You can't grease the wheels of society if you are busy throwing aside convention to follow your dream or die trying.  It doesn't take too much imagination to believe that there are forces at play in our world that depend on this, on the natural tendency of tired, overwhelmed people to smooth over the wrinkles between reality and their sense of how things ought to be.

Tradition tells you to keep your nose to the grindstone, that life isn't fair and that conformity is essential for the majority.  We can't be all airy-fairily gallivanting off to chase our dreams.  Someone has to stay home and keep the lights on.  And so we make the sacrifices, pluck our dreams apart brick by brick until they are small enough to fit the lives we're living instead of changing our lives to fit our dreams.

And I don't know whether it is right or wrong - or if those words can really be applied - to follow one path or the other.  

Some of us tread the middle, and maybe we're okay with it, even more happy than not about it.  We all know people who are desperate to unhook the yoke and can't - or won't - because they didn't realize their dreams until too late and they don't know how to untangle from the obligations they've created, or they lack the resources to step out of the life they're in to find the one they want.  I would guess that's probably the case for most people.  And I would also guess that many people spend a lot of time trying to convince themselves and everyone else that no, they really are doing just what they want, even if inside them the dreams they once held shrivel up into nothing.

I wonder what Ken's dreams were, the ones he held inside and was never able to nurture into reality.  I wonder where his tipping points were and what he felt about them.  

Do we get a medal for being brave enough to learn to be happy with the life we have even if it isn't the one we wanted?

You know, I don't know what I really wanted to be in life.  Mostly I just wanted to be an adult (and its questionable whether I yet qualify).  I feel that I've spent a lot of my life mostly living in the moment and coping with the results.  Like everyone else I wanted to be famous.  If pushed - very hard - I could tell you that I wanted to sing for a living, but when no one ever came leaping out of the wings to offer to make me the next radio star, I suspected it wasn't really an option.  I always considered my horses to be a hobby, and it wasn't until the last few years I've wondered why I didn't think of them as a possible career.  Sure, I wouldn't have ever been rich, but I'm not rich now anyway.  

No, like most of the rest of the human race, I fell into a job that turned into a career and I've worked as hard as I needed to get where I've gotten and if I'd worked harder or been smarter I might have made if further by now but I'm not sure I really care.  

Don't get me wrong -- my life is really pretty great.  There are areas that could definitely use some improvement, and whether I want to admit it or not, I can see the places where I've painted myself into corners.  They aren't forever corners, not a one of them.  They are the obstacles I've chosen and I can either let them stop me or I can let them motivate me to do things differently in the future.

I imagine I will spend the rest of my life trying to identify the things I really want to do and trying to find ways to do more of those things before I'm too old to enjoy them.  And that's OK, and I don't necessarily think its sad in the context of my own life until I recognize the places I see it in the lives of others.  My brother didn't live long enough to start finding the ways to make his inner self become real again.  That's at least as tragic as the fact that the person he was supposed to be got lost in the first place.

Ken is the poster child for those of us whom circumstance dictated a life other than the one we would have chosen for ourselves.  Too many people don't have the resources or the support to self-actualize, to do anything more than try to survive, and just thinking that makes me start to feel a sense of panic, because I know deep down inside that we're meant to be and do more than just survive.   

I could spend my time wishing things were different, but I suspect, rightly, that my efforts are better spent doing things to change the equation for myself, for those I love.  

This self-actualized little boy is following his dream of being the cutest cowboy that ever lived.

Relationship math

 

I love to read relationship books.  Whenever I read something that reminds me of my relationship with SG I marvel at how intuitive, how clever, how well researched the author must be.  When I read something that doesn't fit us at all, naturally either the author is a charlatan or we are the exception to the rule.  My husband is more than a standard deviation from the mean, if you know what I mean. 

Anyhow, this current book I'm reading is all about how Attachment Theory is really what comes into play in our love relationships, that our primary relationship with our partner follows many of the same patterns as child/parent attachment.  Similar to the way a healthy parental attachment fosters a sense of security and the ability to be happily independent in a child, a healthy attachment in an adult relationship makes each partner feel safer about indpendence - both theirs and their partner's.  According to this theory, then, a clingy, jealous or insecure partner isn't just being a jerk:  they're dealing with abandonment issues. 

Makes sense.  It helps me see my distaste for SG's road job in a different light; a person whose standard motto regarding relationships goes something like, "Everyone leaves.  Period." isn't likely to feel too secure about having their partner off living the single life for a couple of months at a time. 

Time and love do much to cure the places we are broken, and SG and I have seen a lot of that happening over the course of our relationship.  I'd love to say that I'm completely without insecurity, but I would be lying.  I am, however, much more secure in this relationship than I can recall being in a very long time.  

Which is good, because we're pretty sure he's going to end up going back on the road.

Its not that his in-town full-time job is a horrible job, or anything.  But its not what he's used to.  Its not what he likes or wants to do.  He likes the road.  He likes his solitude.  It doesn't mean he likes being away from me or that he doesn't want to be with me.  But its work and pay that agree with him, and if being alone for several weeks at a time are the price, its one he's happy to pay.  Not everyone has the luxury of choosing what they do for a living.  Hell, at best we choose between several imperfect options and pick the one that's simply the least worst. 

We've had some very long and occasionally very intense discussions about this of late.  We've spent time exploring our feelings about our relationship, about ourselves, about what we want out of our lives and where we want to be ten or twenty years down the road.  We've talked about what's hard about him being gone for me -- being lonely very much the primary issue, followed by being overwhelmed -- and about what's hard for him about about the current situation. 

Compromises in relationships don't mean each party gets what they want and then they hold hands and skip down the primrose path while rose blossoms fall from the sky and birds sing love songs.  Oh, no.  Compromise means sometimes I have to give up more than I think I want to and other times the short stick gets drawn by my husband.  Compromise means maybe my husband goes on the road, but at the same time we get someone to come help with the housework and the yard so that I at least get a break to do things that I want to while he's gone.  Compromise means maybe he doesn't take the six month job that would bring a much bigger payout, but takes fall and spring work and spends the winter at home.   And lets be honest, the days he's here and I get to go gallivanting off on my horse while he stays home and wrangles my offspring there is absolutely no doubt about who is getting the short stick.

So little in life is absolutely perfect.  I would say, if pressed, that SG is the perfect man for me.  I think he would probably say I'm the perfect woman for him.  I know there are times both of us will tell you how the other is driving us insane or irritating the crap out of us, but even then there are billion reasons its worth it to get to the other side of the trying days.

Remind me I wrote this come fall, will you?

On Guilt

My post from last night got me thinking.

I don't know about other moms, but I suspect its the same thing.  Whenever I hear a new theory about the causes of autism, I feel defensive. 

I mean, if vaccines DID cause autism, then I, the parent who made the choice to vaccinate my child, am part of the reason my son has autism.  Or if its the things in my house that made him sick, I bought those things.  I exposed him.

Even if its simple genetics -- those are my bad genes he got.  Well, mine and his dad's, anyway.  Which all leads me to consider inherent Mommy Guilt and to ask myself what good does it actually do?

If one stops to consider that even the best lives have times of pain, sickness, heartbreak and struggle, then it stands to reason that the simple act of bringing a baby into this world is automatically going to cause your child to suffer.  And as your child grows and you have to make decisions about where you live and where they learn and who you interact with and what they wear and what faith you follow (or don't) -- all of these things lead to other things which at some point in time will cause your child pain.   Just choosing to take a certain route to the grocery store might be the one thing that caused you to be in a car accident in which your child was injured.

In this life, it is a certainty that we will all suffer, we will all struggle and we will all ultimately die.  Why then, do we have children?  If we only consign them to certain pain, what's the point?  (Rhetorical question, by the bye.)

Does parental guilt serve a purpose?  Why does it exist otherwise?  (Not a rhetorical question.) 

It stands to reason that the concept of parental guilt is not a new one.  Surely when Cain slew Abel, Adam and Eve must have had more than a few terrible nights wondering where they went wrong.  The instinct to protect our children is incredibly powerful and nearly universal.  We've all heard the stories of adrenaline-fueled parents lifting cars off of their toddlers, of parents hurling themselves in front of buses to push their child out of the way, of parents braving flames in order to free a trapped baby.  The need to protect is instinct, there is no decision process involved.   It would naturally follow, then, that when our child suffers, we feel somehow responsible for not having prevented it.

A little guilt goes a long way.  The parent who feels guilty about working long hours may be prompted to make more of an effort when they are home to spend quality time with their family.  Guilt causes us to try to make the best parenting decisions we can, to learn from our mistakes and to continually improve.  When we want our children to be happy and healthy our parental conscience drives us to be and do better. 

But I think guilt can also go too far.  The parent whose child is sick or has a pervasive disorder - what good does guilt do for that parent?   The parents whose children got sick and died in Holbrook, MA from playing in toxic fields behind the chemical plant, what good does guilt serve them?  They couldn't have known.  The truth is that there are things in life we are never going to be able to prevent.  There are pains and truths everyone must learn as they grow.  They are part of the maturation process, they are the stressors that build our character, our resolve and our resilience.  If we never had our hearts broken, how would we learn to make better relationship choices? 

Life to me often seems like a continual progression from one hot stove to the next.  As I blow on my singed fingers from the last character-building experience, I often wonder from whence the next lesson I learn will come.  And so it is, so it will be, for my children. 

I think its possible to be happy without having to experience pain, but I also think that I'm more grateful for being happy when I can contrast it to the times I have suffered.  The joy of being in love is clarified by the experience of losing a relationship.  The enjoyable and relaxed trail ride is even more satisfying in contrast to the memory of the ride where my horse and I parted company - painfully. 

Still, I find as a parent, that I have yet to learn when it is OK to ratchet back on that guilty defensive posture.  I suppose its natural to react strongly to a perceived sense of being blamed when in fact there have been many times since my childrens' various diagnoses that I have very much felt entirely responsible for every single one of those issues.  Rightly or wrongly, that self-searching is a process I think we all go through when our child experiences something greater than a scraped knee or a cold. 

At some point, though, I had to recognize that blaming myself wasn't going to get me anywhere.   in order to be the parent my children need, I have to let go of self-recrimination and be in this moment, making better choices.  Andyou know, even in the worst case scenario where a parent does indeed make the wrong choice about a babysitter or a pet or a medication or any myriad number of things, self-blame is not a constructive thing beyond the initial recognition of "I could have chosen better."  Recognize it and move on, because the next time you will make a better choice. 

So yes, I recognize that I tend to overreact and jump on my soapbox.  Those moments, though, are useful to me, because they help me recognize the areas in my life that could use a little growth. 

 

You're Beautiful. No, Really.

Jane Devin wrote another great thought-provoking blog post yesterday about beauty.  I'm a huge fan of Jane's writing.  Her book Elephant Girl was as haunting a memoir as I have ever read, but her use of language as an art form makes it impossible not to read her, even when what she's written about is ugly and painful.

So anyway, beauty.  Jane writes, "We’re never going to make it okay to not be physically beautiful if we don’t get off this beauty kick we’ve been on for so long. We’re not going to change our futures and those of other women as long as “beautiful” remains a priority. We’re not going to change the culture that places such an inordinately high premium on female attractiveness as long we keep promoting beauty myths through the lies we tell ourselves and each other."

  I posted on her FB wall that I wasn't sure I agreed, and I mentioned my now-deceased friend Peg, who was morbidly obese and losing her hair thanks to Rheumatoid Arthritis and a cupboard filled with medications both toxic and ill-suited toward maintaining one's weight and hair volume.   Whenever I saw Peg, or when I think of her now in my mind's eye, I see beauty.  I see large brown eyes with impossibly long lashes and I hear the softest, most soothing voice imaginable.  I hear her tinkling laughter as she regales me with yet another story about her Boston catholic family. 

I concede the point that we give too much emphasis and value to the concept of beauty when we try to compliment someone or try to boost their self esteem.  But I also believe we misuse the word "beautiful." The term has been warped by our media to mean an almost impossibly achievable standard of physical appearance.  And Jane isn't really talking about the people who miss this standard by some small or even medium mark, she's talking about when the whole person doesn't come close due to physical deformity or flaw and that the act of trying to make someone feel beautiful when they aren't phsyically attractive is to her a disservice.

I know Jane's opinion comes from experience and from her own sense of self, her dedication to speaking the truth as she sees and feels it.  We talked about it back and forth on Facebood a little, and to a large extent I agree with her...but there is a space between that extent and my own feelings about looks and attractiveness.

What I wish were possible was for the propensity toward shallowness to somehow disappear from the human gene pool.  Its not ever likely to happen, but I can still dream about it.  I'm raising a girl, and there's no doubt that females are held to much stricter standards than the male population.  (In general, that is, because there are certainly men and women who possess no such incremental measurements of beauty when appreciating one another or their partners. )  It starts so young, with the TV shows for tweens that have mostly very attractive and thin lead characters, and their not-so-cute and maybe-a-little-dorky and often a little fat sidekicks.   Its pretty easy to decide which character you'd rather be -- and pretty easy to look at yourself and see all the reasons why you could never be her. 

It only gets worse as we get older.  Movies and television use all the tricks of makeup and lighting, props and camera position to disguise that which is unacceptable and magazines taking it a step better and photoshopping models and movie stars to the point where the real person and the picture no longer resemble one another.  And these are the people we are supposed to emulate?  How can we emulate them?  Trust me, if I could photoshop my ass for real to make it a couple sizes smaller, I would.  Well, maybe I would.

I'll never forget the really average-looking guy who came up to me in a bar when I was in my very early twenties, and said (right to my face!) "You'd be a really attractive girl if you didn't have such a big butt."  I spent every day of my life from that day forward feeling horrible about the size of my posterior.  One doesn't forget that sort of comment. 

How do we teach people to value themselves and others by non-physical standards?  How do we teach people that diversity in size and color are not marks of shame but badges of uniqueness?  How do we get human beings to learn how to give a compliment that doesn't include the words except, but, if only and however?

To address Jane's point, what about those who fall far short of the current physical standard of beauty?  Is it a disservice to seek beauty in those who feel they have none?  Do we need to know we are beautiful?  What is beauty anyway? 

And maybe that's where I see the difference in people -- my definition of "beauty" is subjective.  It isn't necessarily the same as others.  I see people as a whole picture.  I look at my husband and even though I could give you a short checklist of things about him that aren't what might be considered conventionally handsome, those aren't the things I see.  The things I see are the things that make him handsome to me -- his big smile, his broad shoulders, his warm brown eyes, and the one thing I can't see but I can hear it the moment he opens his mouth -- his intelligence and his sense of humor.  I'm NOT LOOKING for the other things.  I suppose its the same for him -- when he looks at me he sees the things he likes and discards the rest as unimportant.

I think I could look at anyone, even someone I don't particularly care for or someone who copes with a serious lack of conventional attractiveness and I could still see beauty in them.  Beauty and ugliness coexist in all of us, and they can't always be seen with the naked eye.  No human being who has ever lived is immune to the ugliness of that petty, selfish little voice in our heads, and no human exists who doesn't display physical and emotional moments of pure, unadulterated beauty. 

Childbirth -- not the prettiest sight imaginable.  And yet, that slime-covered, squalling purplish red infant with the pulsing cord still attached is beautiful in a way that cannot be described in words.  The physicality of the act of giving birth - blood, fluid, poop on the table, maybe an emergency cesaerean with intestines being pulled onto the table to get them out of the way!  There is ugliness but the spiritual and emotional experience of expelling life into the world was for me and for many women as beautiful as it was painful.

I postulate that we are all - every one of us - both beautiful and ugly.  The outside may lean far more one way than the other, but to deny the existence of beautfy at all is to deny that inside this flesh wrapper is tethered a being made up of nothing but spirit.  We are not our bodies.

Like Jane, I tend to find things other than physical appearance to compliment others on, regardless of how physically attractive they might be - or not.   But I'm going to politely, compassionately and lovingly disagree that we do service to another by refraining from letting a person know we find something about them beautiful.  Insincerity is in itself not at all useful, but a sincerely meant compliment is another thing entirely.  I compliment my daughter on her sense of humor and her strength, her sensitive and loving heart, her ability to write amazing stories and her fierce protectiveness of all things  furred and feathered.  I try to compliment her on these things more than her beauty, because I want her to always have those messages in her mind when she remembers what her mother thought of her, but she also knows I think she is stunningly beautiful. 

Jane of the amazing large eyes, I only know you from your photos on your blog and your book, but know that I do see beauty when I look at you.  We both have voices in our heads that spit out reminders of the things we know about ourselves that are the antithesis of "pretty."  Nonetheless, you have beauty that is not limited to the inner you.  Its there on the exterior as well.

 

 

Coming soon to Barnmaven.com:  My colonoscopy!  And yes, even THAT is beautiful!  I KID YOU NOT.

 

 

Your greatest teacher

How is it that so many people make a living convincing us that we're not living the best lives we can possibly live?  We'd be happier/more fulfilled if only we invested our money and time in their sure-fire program to improve our selves/homes/yards/clothes/bodies/faces/attitudes.   And if we question any of the steps of their particular program or mention that our life experience doesn't jive with the brand they're trying to sell us, we either didn't understand the book, there's another set of DVD's we should purchase that addresses that VERY thing, or we're just DOING IT ALL WRONG. 

Hint:  Most people who make a living telling you how to live your life don't make money if you don't buy the line that they know better than you how to become happier - more popular, more successful - more authentic/creative/better-looking/ thinner/ curvier/taller/hairier/less hairy.

I've noticed too that many Important People who make a living selling you their ideas don't like having their ideas questioned or hear about the ways in which your life experience doesn't match up to their "program."  If you got in a car accident and you were depressed, you must have manifested it or you just didn't work the program right.   If you didn't make a fortune after the first three months of following their Internet Miracle Marketing scheme,you just need to invest more time (and money) in their product in order to achieve the promised success. 

Its not that these writers, geniuses or gurus don't have something to offer -- they do.  They all do.  But not a single one of them is the end-all, be-all of life.   No book or DVD or system is going to solve all of your problems or turn you into somebody else.  And you need to know that the people who write these books and sell these programs don't have all the answers.  Maybe they have the answers for themselves and their own successes, but they don't have all the answers for YOU. They each carry with them the assorted baggage of their internal belief systems, their life experiences, their particular biases.  They all prefera certain way of doing things and would like you to believe that they offer you this wisdom only as a way to "help" other people.  That's easy to believe so long as you don't look at the man behind the curtain - or the price tag on the next set of DVD's.

And maybe some of the things they espouse will work for you.  But likely as not there will be parts that aren't a good fit.   That's where you have a choice.  You can accept what works for you and not worry about the rest, you can reject the entire philosophy because it has to be 100% perfect for you to accept it, or you commit to it anyway and try not to worry too hard about pretending to agree with the parts of it you aren't convinced about.

You get to live with whichever choice you make, but please know that you don't have to throw the baby out with the bathwater and you don't have to walk around in clothes that don't fit.

I relate it to the way I go about learning with my horse.  There are a LOT of famous trainers and clinicians out there.  In the same way as some people feel compelled to convert you to their new religion after a deeply moving spiritual experience, people who've had a breakthrough with their horse after learning from a certain trainer want to introduce you to the Next Best Thing to happen to horse people.

Since I'm open to learning new things and new and better ways of getting where I want my horse to  be, I'll glady invest in lessons or a clinic with that trainer, or audit a clinic if its out of my price range for me and my horse to participate.  If I'm open minded enough to try that trainer's suggestions, I might find something that works a lot better for me and my horse.    But if I find that the thing I was already doingt that I learned from someone else works better, I'll keep doing that instead. 

A good trainer won't insist you do things his or her way.  In fact, a really good trainer will watch what his students are doing and be willing to ask about something if they see it and they think its working as well or better than their own techniques. But you don't have to believe any trainer that insists if you're not doing it HIS way you're doing it WRONG.  The proof is in the results you get with your horse, no matter what the trainer says.  You don't have to keep doing something that just doesn't feel right to you. 

You don't have to stay in a relationship that doesn't feel right or where you don't feel safe.  You don't have to stay in a job that doesn't fulfill you. You also don't have to engage in a personal/spiritual/self-help program that's not working for you just because the person who happens to gain from your participation tries to make it sound like you're just not doing it right and you need to try harder.

Just because someone is successful and an "expert" doesn't mean they're going to be any better at living my life than I am.  They just get paid to convince me that they are.    Just because they wear a certain kind of clothing or use a certain kind of household product doesn't mean that my jeans don't fit me just fine or my countertops are any less sanitized.  Just because I don't agree with their dogma doesn't mean my own faith is wrong for me.

Look, I KNOW when I'm doing the right thing and I know when I'm not.  I know what fulfills me, what charges my battery.  I know who I'm supposed to be.  There's an inner voice and a feeling of well-being that comes when things are as they should be.  I think that's God talking to me, other people may consider it their conscience or the manifestation of spirit within them.  Whatever works for you.

I know that spending time with my family and my friends feels good.  I know that helping other people feels good.  I know that riding my horse feels good.  I know this about digging in the dirt, playing with my dogs, petting my cats, working in the barn, swimming in the river, making music and writing words. Being thankful to God and trying to develop as a person who is loving and compassionate feels good and right.  But you know what, these things are authentic for me.  No conference, retreat, keynote, book or CD  is going to change these things about me.  And I don't need the approval of a life coach or a guru or anyone on the internet to know that I'm OK.  

The list of the people whose opinion I actively seek on whether I should do this or that is short.  You're probably not on it unless you're my husband, my mother, my close friend or my horse trainer.  It doesn't mean I don't love you and it doesn't mean I don't value your opinion.  I do.  It feels good to be liked, to be agreed with, to receive support and cheers and have like-minded people share with you.  But it also means that if do something or write something that you don't agree with, I won't be crushed or feel rejected or bad about myself.   It means that if some famous "authentic living" guru insists that I couldn't possibly be happy because I'm not doing things their way, I'm going to somehow feel that I must change my beliefs to suit their agenda.

Maybe you don't feel confident, maybe you don't feel like you're "ok."  Well, that's fine.  That's your own voice letting discomfort drive you into doing things differently because what you're doing now doesn't seem to be working.  When you seek new wisdom and new approaches, keep in mind that there is no program in this world that will make you or your life perfect.  Remember that everyone has a different perspective on the words "best," "ideal," "correct" and "true."  Seek answers everywhere you go.  Take what works for you.  Leave the rest.  Seek the approval of your own conscience and those who matter most.  Don't believe everything you read on the internet, in the newspapers or in the pages of a self-help book.  And remember always that we are never, ever "finished" learning or growing. 

The journey, the moment, the now, they REALLY ARE the point.

 

The Language of Special Needs

I got a text this weekend from a friend.  She is a young adult "on the spectrum," as it were, and she had somewhat of a Facebook argument with another woman over a meme the lady posted about Autism.  My friend didn't like the implication that autism is not a disability but simply a difference and made her opinion known.  She wrote about the different issues children and adults can and often do have when they have an Autism Spectrum Disorder.  She responded from her own experience, in all earnestness. In response, apparently, the original poster called her a "bitch" and wrote that autism isn't a serious issue and said people need to stop complaining about it.

I have such a depth of feeling about this.  Its an internal conflict in a lot of ways,  because technically, my daughter's bipolar and ADHD and my son's Autism and associated disorders most certainly will cause them difficulties neurotypical people don't have or ever have to think about.  On the other hand, I think both of my children are capable of doing just about anything they set their minds to, and I refuse to let them use their issues as a crutch or an excuse.  Just yesterday, my daughter remarked in passing that her brother couldn't keep himself from fighting because of his autism. 

I told her,  "I'm not sure I agree with that.  Do you think he gets to just fight with people without consequences?  I don't.  I think he has to work harder than other people to control his behavior, but he doesn't get a free pass to just behave any old way he wants to, honey."   She thought about this.  "So its just like I get in trouble for fighting with Race Car Man even though I have bipolar?" 

Exactly.

On one level, I think that a cure for autism isn't necessarily on the horizon.  And no, for the record, I don't buy into Jenny McCarthy's assertion that her son has been "cured" of autism.  I think there are a lot of therapies and treatments and foods and supplements that can help kids and adults with autism function better and more successfully, but we don't know enough yet about the causes of autism and the inner workings of the autistic brain to be able to have a cure.  Should we be funding research for a cure?  Absolutely.  But at the same time, we need to be spending our time and our dollars making sure that we give kids with autism the skills they're going to need to live as adults with autism.  We need to be cautious of the words we use around autism so that we are not being derogatory or having pejorative overtones about a community within our larger community.  People with autism don't necessarily want to hear about the ways they are different -- they are looking for the ways they can fit in.  And frankly, some of the characteristics they bear as a result of their autism are truly gifts.   

I don't think you can look at someone like Temple Grandin, whose difference in executive functioning make it possible for her to understand animal behavior in a way that most neurotypicals can't begin to understand, and think of her autism as a 'disability.' 

There are a lot of conflicting opinions in the autism community about the language that we use and the way we portray people who have autism.  A lot of advocacy groups and adults living with autism are extremely opposed to the tactics of the group Autism Speaks.  The opposition stems from a number of reasons, primarily because Autism Speaks doesn't include a large enough percentage of adults with autism in their executive leadership.  Many parents and families of people with autism and many adults with autism also take issue with the way autism is portrayed by Autism Speaks.  They feel personally denigrated by videos and messages that talk about how terrible life is for families of kids with autism, by descriptions of their more challenging behaviors and thoughts.  There are hundreds of thousands of adults with autism living successful lives, managing careers and marriages and raising children. 

There are two sides to every coin, and autism is no exception.   The divisions within the autism community are understandable, impossible to ignore, and perhaps uncrossable.   Because autism is a spectrum disorder with greatly ranging degrees of affect, everyone's experience will be different.  Because no two people react to the same stimuli in the same way, one person's response to dealing with autism and their perception of how it impacts them will vary greatly from anothers. 

I don't believe autism has ruined our lives, I just think autism has given us some challenges we might not otherwise face.  But who am I to tell a mother whose marriage has failed and whose non-verbal child is a frequent eloper or who is physically violent that she's wrong if she feels differently than I?  Just as I would want her to understand where I'm coming from, I sure as hell bet she wants me to walk a mile in her shoes, too.  I also bet that there are times she wishes someone would find a cure right this fucking minute for the behaviors that make her life incredibly difficult and stressful. 

We take issue when a mother with an autistic child kills her child and then takes her own life.  We don't want the world to think that autism is this terrible, dark thing that can't be overcome.  We, as parents, don't want anyone to look at our children and think these things about them.  We want people to see the beauty and the strengths and the uniqueness in them.  Or at least, I suppose that we do.  But I don't know what the mother whose son was denied school placement was thinking.  I can't speak for her at all.  Clearly she was overwhelmed, probably under-supported, and desperate.  The mother of the adult son with autism was said to have a very loving relationship with her son.  What were her thoughts as she committed this terrible act?  We will never know. 

Parenting a child with autism or pediatric mental illness can be hard, terribly hard.  For most of us it is NOT the end of the world.  Having autism and learning to cope with a brain that is not wired to function in the typical world can be anywhere between 'okay' and 'devastating,' depending on the individual and their place on the spectrum and the support, resources and therapies available to them.   Holding your bipolar child's needs close to your heart as you deal with them on the days they are unable to be loving or likable isn't very easy. 

We can't forget the families of the severely autistic individuals who rely on lifelong care.  As with any condition that renders a person unable to take care of their own basic needs, life becomes far more challenging and difficult, stressful and scary.  But those things don't have to mean that the person with autism and their family don't also have love and joy and wonderful times together.   The thing is, we can't deny that at least for some families, the good days are scarce and the bad days are the norm.  Some people aren't as capable of handling that as others.

Is it just too pat to say "Life is what you make it" ?  Life isn't fair, certainly.  We are all born with different abilities, strengths and weaknesses.  As humans we have the same rights, but we don't all have equal capabilities.  We must acknowledge this basic fact and work upwards from there.  My kids have stuff they've got to overcome, and sometimes that's really hard to cope with.  But cope with we must. There's more than coping, though.  We work to meet challenges and we celebrate our successes.  We learn from the bad days and we are thankful for the days that are good.  We cry, we rage, we beat our fists on the concrete, and then we get up and walk out the door with our hopes intact.  Some of us, though, throw in the towel.  Some of us don't see the up side.  Their experience doesn't invalidate my own; nor mine theirs.

Both extremes and neither. 

Can we live with that?  I don't think we have a choice.

 

 

 

Dog + Bone = Me

As much as I throw it out there that letting go of things is a healthy way to exist, I'm not always so good at being a person who lets go of things.  I have a tendency to perseverate.  My husband and I will have a disagreement over something, and days later I am still stuck on a particular thing he said that I thought was wrong, and having repeated conversations with myself where in I roleplay both of us and stick my point to him over and over until he falls over from the sheer brilliance of my superior mind. 

Or some drama on the internet will settle hooks into my gray matter and no matter how useless it may be, I find myself idly drawn to hunting down more tidbits of information or opinion.  Sometimes its not even an issue I particularly take sides in, but part of me just can't help but watch it unfold.  I pick up nuance and opinion and data and start playing them on an endless background loop. 

My shrink said that I do this in order to distract myself from my deeper feelings of fear and loss, of self-loathing and shame.  I would counter that as I age I find less to loathe about myself, but I can't help but admit that I still struggle with all of those things.

If life were fair and if life unfolded according to my plan...probably we'd all fall off the surface of the planet because I would have forgotten to make sure we always had gravity turned on.

So then you'll agree its probably best I'm not in charge of this whole shebang.

I'm struggling lately with feelings of loneliness and fear.  By the time my husband comes home from this job he will have been gone...a lot.  Putting numbers on it doesn't really do anything but make it seem worse.  Lets just say gone more than he's been home.  And I'm selfish.  Even when I know that he, as a capital-M Man has the same drive that I have to shoot the biggest mammoth I can in order to provide for my family, I still at the bottom most layer of it just really want him to not be gone.  I want someone besides the Betta Fish on my kitchen counter to talk to in evenings when the kids are at their dads.  I want to go out to breakfast with SG, not alone and certainly not with the kids.  I want to come home to my husband's arms and his being glad to see me at the end of the day.   

And I find myself being childish and petulant about it. 

I think of my son, upset because he can't play his beloved game.  He makes it into a Supreme Court Case.  "If you really loved me you'd let me play."   "My life is ruined right now and nothing will make it better."  "I hate you."  "Global warming will end if you just let me play my game."  (No, he didn't really say that.  I made it up.  But how cool would it be if he DID say that? How utterly cool?)

I catch myself being dramatic even in my thoughts. 

I'm always alone.

No one will ever really love me.

We're all going to die in a fiery explosion because I have to be celibate for three months.

IF HE REALLY LOVED ME HE'D GIVE UP EVERYTHING JUST TO BE WITH ME.

You know, stuff along those lines.  Real sane, level-headed, purposeful CLEAR thinking.  Ha, I crack myself up.

And I'm not really sure how to make that thought cycle stop. 

Help.

Lady, you are so fired

There are three things it is nearly impossible to find when you relocate from one town to another: 

• Dentist
• Lady doctor
• Hairdresser

I finally found the right dentist and hairdresser in the last couple of months.  It took damn near five years, but I finally found the right fit.  Personality is a big part of it, but quality of service is important too.  I want care providers I enjoy interacting with and from whom I can expect not just a high quality of care but some personal attention.  I want them to remember who I am, what I've discussed with them in the past, what my kids names are.  I want them to remember that I never shut up about horses and special needs kids and that I hate needles and I also hate having my hair styled like I'm somebody's middle aged mother.  (Yes, I know that's what I am, I just don't need my hairdresser reminding me of it.  I want The Sexy.)

I had found what I thought was a great little practice.  It catered to mothers and children and was run by a Registered Nurse Practicioner.  They had a funky little clinic and even offered sick child care at a reasonable cost for mothers who had a sick child with whom they were unable to stay home that day.  I liked having a female practicioner for my female stuff, and I liked that she could also manage my ADHD meds.  I mostly didn't mind the long waits when I went in.  For one, OB practices are often like that.  A baby arriving might push all the appointments back.  And because she would take time talking to me, I assumed that she gave the same consideration to her other patients.  I liked that. 

Little by little, though, things changed.  And I didn't like it.  First she started offering the HCG diet out of her practice.  I'm one of those people who think that fad diets are dangerous and I wasn't impressed that my doctor was jumping on the fad diet bandwagon.  The waits started getting longer.  I waited an hour for an appointment, and it was pretty clear from the stack of people in her waiting room that she was trying to rotate too many patients.   And then, two visits ago, at the end of my visit, she handed me a business card with my prescription.  It was for a company that sells internet service and cable tv and wireless plans.  "I dont' know if I told you about this company I'm representing.  If you are in need of any data services please give me a call." 

I know doctors don't make a lot of money these days and I realize that its terribly expensive to run an OB practice with the burden of medical malpractice insurance, but really?  I'm a little more compartmentalized than that.  You're the doctor who looks at my vagina.  I really don't want you reviewing my cell phone usage, too.  And if you're trying to take care of too many patients at one time, its a sure bet every single one of us is getting a lower quality of care.

I guessed (correctly) at that point that finances were strained and she was looking to supplement her income in any way possible.  And of course, she has the right to do that.  I might not have jumped ship at that point, because I am human and I do try to be understanding.  But after the last appointment I don't know any other way to proceed.  I made an appointment for a prescription refill.  I hadn't been to her practice for three months.  I pulled up to the door with 10 minutes to spare for my appointment, only to find an empty office.  Empty as in completely devoid of furniture, phones and people.  A sign on the door only said that the office was closed, but didn't indicate if it had moved somewhere else.  I was confused.  I had made the appointment only a few days earlier.   Did they close their doors suddenly?  So I called them, and when the receptionist answered I was even more confounded.  "We moved offices." 

Wouldn't that be something you might have wanted to tell me when I made the appointment?  Or maybe added on to the "No Longer in Business" sign on your door?  So I threw the kids back in the car and drove to the new location.  I waited forty-five minutes to be seen, though the guy schlepping pharmaceuticals came in after I did and got to go back and have a few minutes of her time before I got to have my appointment.  I had to fill out all new paperwork because apparently my old paperwork didn't move to her new office with her.  And at the end of my ten minute appointment (that I had to wait a half hour for), she once again handed me her new business card with my prescription.  "I don't know if I told you about this company I'm representing."

Yes, yes you have. 

I suppose if I was interested in a dialogue I would let her know personally why I'm leaving her practice.  But the thing is, I never know if someone really cares that you don't want to be their client anymore.  Not if they don't care about telling you they've moved or remembering what they talked to you about the last time you looked at their cervix.  I mean, she'll figure it out when I don't come see her anymore.  I'm sure the request from my new doctor for my medical records will be a clue too.

 

Harder than it looks on film

I love how in the movies a character, usually portrayed by someone who looks a whole lot better than I do in blue jeans, will experience a transformative moment, immediately understand the whole point and the lesson in one fell swoop, and then BOOM!  Off she goes to live happily ever after.  More likely than not this is how she will cope with every new learning experience forever. 

OK, sometimes we'll see a character who takes the entire damn movie to learn the lesson, but what I never ever see is the character who learns it, forgets it, learns it some more, backslides, remembers, and continues to do this same tango forever ad nauseum.

Why is that?  Am I just doing it wrong?  Or are the people on the screen portraying something so patently un-doable that lamenting my inability to do the same is a pointless exercise?

Yesterday I wrote a completely tongue-in-cheek sarcasm-ridden paean to my ex.  No, it didn't go live.  Nor should it ever see the light of day.  But god DAMN it felt good to write it. 

It felt commensurately HORRIBLE to read it and understand how far I have failed to progress in my self-stated quest toward elightenment and compassion.

I continue to presume that I understand the reasons why people do things that affect me.  Good or bad, I assume intent.  Maybe sometimes I'm right, but how would I KNOW that?   Its not like I ask for confirmation or anything.  "Do you refuse to actually speak with me on the phone because you prefer parenting via text messages?"  And see, I'm still kicking around in the shallow puddles of hostility.

It still hurts, though.  I want to be better at this coparenting while divorced gig, and the truth is, the whole thing pretty much sucks ass right now.  My ex lately communicates solely via texts on the cell phone.   He still has yet to acknowledge the existence of SG.  On the rare occasion when he's had to be within the same vicinity as my husband, his main tactic is to simply avoid looking directly at him.  Is this because he hopes it will make him ACTUALLY disappear?  I have no idea.  And I assume intent. We speak on the phone and he speaks in monsyllabic monotone, and the writing on the wall screams "I DON'T WANT TO SPEAK TO YOU."

How do you parent your kids with someone who you've never been able to truly discuss problems with? 

I don't have the answers.  And I'm not really pleased with the way I'm reacting to things.  I don't feel I've grown very much as a person.  That bothers me.  I recognize so many times that I've ignored the high road, done and said things I take no pride in, wanted to continue to spread the pain around rather than let the healing begin.  I still seem to take an unreasonable amount of time wanting another person to be other than they are, which is a bloody useless effort.

If I had any balls at all, I'd calmly set some boundaries and leave him to respect them or not respect them.  If I gave some decent thought to what everyone's going through, I'd acknowledge that there might be a lot of reasons he's doing the things he does that have nothing to do with the motives I've so handily ascribed to him.  Maybe he's in pain.  Maybe his job is stressful.  Maybe he's having relationship problems.  Maybe the autism diagnosis is hard for him to wrap his head around.  Maybe a lot of things -- maybe none of them.  But the point I keep forgetting is that it isn't at all about WHAT HE IS THINKING.  It is a thousand percent about how I'm reacting. 

Maybe this is how the process of personal growth really goes.  Maybe I'm supposed to figure these things out one painful step at a time and everytime I think I have a grasp on something I'm supposed to then get complacent and lose sight of things. 

Maybe.  Or maybe I AM just doing it all wrong.

 

 

 

On understanding why life is sometimes a mountain of crap

I just posted a comment over on a blog I read fairly regularly.  If you want to read some exceptionally beautiful writing, go read Finding Your Voice.  Jennifer Lawler is a gifted writer, and everytime I read one of her posts there are three thoughts that go through my head.

1.  She has an amazing talent and prose that gives shapes to words, makes sentences into concrete things and describes feelings that punch you right in the stomach.

2.  My writing, in comparison, is crap

and 3., most of all 3., the petty things that I tend to complain about are hangnails taken in the context of what she and her daughter live with and go through.

Go read her blog, really. 

I was commenting on her most recent post and as I was considering what she had written, I thought of that old saying "you always get what you deserve," and I thought to myself, no, that's not really true.  And typed instead, Nobody ever really gets what they deserve, do they.

But then I wonder, what is it we really DO deserve?

Do we deserve anything?

And where do we cross the line, either way, into accepting what it is we've got or not got, or into being either smugly entitled or sadly feeling as if we earned some kind of terrible karma?  When is it OK to say "I earned this, I worked hard for it, and I'm proud of myself," and when is it better to just shut up and be thankful that you've had opportunities maybe other people didn't get? 

There's no universal great equalizer that I can determine.  There is always the potential of equalization, either via natural disaster, coincidence, or consequence, but the fact of the matter is that in this life, at least so far as I can see, there are always people who have more and people who have less.  And perhaps its a simple twist of fate that one person who has a great idea finds the right set of circumstances to turn that idea into wealth and fame, and another person who is also full of good ideas never finds exactly the right opportunity to make it big.  That one couple has lots of healthy babies and another couple can't have any, or they have a baby who is desperately ill or who dies.  That someone who is less capable gets into the college of someone else's dreams.  That one baby out of six other babies gets to go live with parents who were for the most part gentle and loving and the other five got a brutal existence at the hands of a pedophile and their abusive mother.  That one guy steals other people blind and lives the high life and doesn't get caught, and another guy can't steal a gallon of gas to get to work on time without getting nailed and jailed.   That a faithful spouse gets cheated on.  That some folks are unbelievably wealthy through no real effort of their own while others live in brutal poverty simply, each because they just happened to be born to a particular set of parents.

And what is it, exactly, that we are supposed to learn from this?  What's the takeaway, kids?

Damned if I know.

Or maybe, I'm not sure yet, but I'm trying as hard as I can to understand.

I am then reminded of David Richo's Five Things:

Everything changes and ends.  Things do not always go according to plan.  Life is not always fair.  Pain is part of life.  Poeple are not loving and loyal all the time.

Richo presents a philosophy that says "I can either be crushed, possessed, devastated by the circumstances in my life or I can become a witness to them."  This doesn't mean being a beaming ray of sunshine "Oh, hey, everything's great! Yep!  Never mind that my marriage ended or I lost my job or I have a terminal illness, don't worry -- I'm just FINE!"  No, what he means is that we neither stifle nor give in to the emotions that are an inevitable part of being alive and human, but that we feel them so fully that they move through us and move on. 

Neither stoic nor overwhelmed.  And accepting that there is a big pile of awful, unfair things that happen in this world that we have no control over.  Living with compassion for others and being moved by their circumstances, listening to their pain and caring what happens to them.  Caring about what happens to us. 

I don't know sometimes how I'll find that balance.  Richo and other writers like him often recommend meditation as a path to mindfulness.  Which sort of makes me feel left out of the game, because meditation and I are not close acquaintances, not now and not likely ever to be.  But I find myself more often turning the radio off in the car and using the silence to ponder life's great mysteries (and try to decide what I'm making for dinner).  I'm trying to be less of a "fixer" of other people's lives and more of a witness and a companion to their suffering.   I'm working on being willing to let my feelings be what they are and to let go of the need to assuage them somehow. 

Maybe I'll never get there, maybe I'll spend the rest of my life looking for pocket gurus to answer my questions and tell me how I'm supposed to live.  

I do believe that I'm never going to actually become a truly enlightened being, not on this earth, anyways, but I hope I at least grow and learn enough to find the beginnings of understanding.  Because I would very much like to understand.